Dealing with residual tumor after neoadjuvant therapy
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Giveityourall - I am feeling better, thanks for asking. I took some much needed rest over the holidays since it was too cold for me to go outside, and my skin is healing up nicely. I have PT tomorrow and hopefully she can work out some of the tightness in my right side. So as far as radiation goes, it seems like everything is going well enough.
I met with my MO and he suggested Nerlynx. But like you, I was Her2 amplified, not overexpressed (2+ on IHC, FISH ratio was 3.3) so I don't know how effective that's going to be. I haven't bothered asking about Kadcycla because it too binds to the Her2 receptors. My MO did not seem very interested in giving me Ibrance this time, and I'm not sure why because when I last met with him he seemed a lot more open to it. He kept saying he "felt obligated" to tell me about Nerlynx, which I found odd. I straight up asked him if he recommended it or not and he said he did. At this point, I'm not even sure why he ordered receptor testing of my surgical specimen (which was Her2-, by the way, 1.05 on FISH - there was no IHC test) if the outcome wasn't going to change my treatment plan. I feel like something happened between that visit and my more recent one to change his management strategy which I am not privy to, and it's frustrating.
My surgical specimen was grade 1 (vs grade 2 or 3 depending on which of my four biopsies you go by before chemo), so at least it will take a long time to come back and kill me
BTW, regarding Nerlynx, I have a feeling the results were watered down by giving Nerlynx to all Her2+ women since it was done before neoadjuvant chemo was a thing, whereas the Kadcycla study gave it to only women with residual disease after neoadjuvant chemo. This may be why triple positives had a better response than the HR negatives - if you had a PCR after chemo, there is no additional benefit to be gained from additional therapy, and more HR negatives have PCR. Since everyone in that study had adjuvant chemo and not neoadjuvant, there's no way to tell who would have had PCR from just the chemo and herceptin. I don't know if this makes sense to you guys or not. Anyway, I haven't read that much about Nerlynx yet, but I believe it does act on more than just the Her2 receptor, and it also crosses the blood-brain barrier which herceptin does not. So it may be worth taking anyway. I have a few more months to decide.
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Hi there!! I’ve been reading your posts and am so glad that so many of you are seeking answers about Kadcycla. It’s a game changer! I have been part of the KATHRYN trial since 2014. However, I did NOT receive Kadcycla. Instead I am part of the group that stayed on Herceptiń (see bio). I’m here to tell you that I’m doing fantastic!!!!!!!!! If for some reason you don’t get Kadcycla ..keep the faith . ❤️
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Girlstrong, thanks a lot for sharing the story. If you do not mind, how large was the residual tumor you had? my wife had a (less aggressive) residual T1aN0M0 tumor, I was wondering if we should convince the MO to switch from HP to Kadcycla or not.
Thanks again,
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debsmisto - I just finished my second cycle on TDM1 and I too was almost done with HP when I switched. So far I’m doing great and I’m only dealing with light fatigue. It’s such a huge reduction in risk I would push insurance for it. If you read the study results in the New England journal of medicine, you can see the impact to each subgroup (including lymph node positive after TCHP) it has some great graphs. Once you see the data it’s a striking difference, with some subgroups getting an even greater than 50% risk reduction
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HAPA,
I am so glad that you are better. What an ordeal!
It is weird that your doctor's reasons/answers seem disconnected. I am sorry that you are experiencing this. I feel that way a lot. I think our rapid medical advancements and doctors' increased patient loads are preventing proper patient teaching. Doctors don't have the time to explain the stuff we need to know. Your solution is self-education..
You know a lot about breast cancer. Regarding HER2, you comprehend the significance between expression and amplification. You understand that this affects your selected treatment/medication.
For instance, as you stated Kadcyla is going to be more effective for a patient with HER2 overexpression. As such, a patient with a strong presence of extracellular HER2 receptors (which are proteins) will benefit from this drug. However, if more of the HER2 is amplified, which refers to an intracellular presence and is confirmed via FISH test, then Kadcyla won't be as effective.
That is good stuff to know and all of us should understand this. It makes us stronger, better self-advocates.
My best, GIVEITYOURALL
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Giveityourall - you have a way better understanding of how the drugs work than I do, I feel overwhelmed most of the time, but I have been fortunate to find an MO I trust. I really appreciate you taking the time to explain how Kadcyla works. It’s so complicated when even those of us who have similar types of cancer can have what amounts to big differences. I’m hoping you find the best possible treatment for your situation.
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Debsmisto,
I am glad that Kadcyla will work for you. In other words, your tumor, per your IHC test (which indicates the HER2 protein on the cell’s membrane or loosely translated, “outside”) showed strong HER2 overexpression. My IHC result was 2+ (translates to equivocal). So, I don’t think Kadcyla is the right drug for me. My FISH results, which represent the HER2 protein in the cell, indicates a stronger intracellular presence of the HER2 protein. So, I need a drug that targets the inside of the cell. Does that make sense? I hope so. Maybe I should make a diagram to explain the drug’s mechanism of action. Due to my so-so writing skills, I am incapable of explaining the process succinctly.
When do you start Kadcyla/TDM1? Hope you are well!!
GIVEITYOURALL
P.S. After a lot of research, I learned there is a test that specifically details the cancer tumor or cancer specimen’s HER2 protein. It is called HERMARK assay. I had the hospital pathology department send in a sample of my residual tumor to Biosciences, a lab that conducts this test. Insurance will cover it. I should have the report’s results on January 11th.
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My main concern is that my tumor was heterogeneous. I think this is what my MO is thinking as well, and so we're treating the Her2 component aggressively since that is the aggressive component of the tumor. But then we're not doing a whole lot about the Her2 negative part which is what was left over after chemo. I'm doing OS + AI and that's it, and that worries me. Is that enough for a tumor that had spread to at least three lymph nodes and showed LVI?
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I feel like I want to ask a question but I don't even know what to ask so I'll start typing and see what I come up with.
I had multifocal DCIS. First largest 6 o'clock tumor was ER+ (5/8), PR+ (8/8) and HER2+ (3+/3). 2nd smaller tumor at 4 o'clock tumor was ER+ (8/8), PR+ (8/8), HER2+ (2+/3). 3rd even smaller tumor at 8 o'clock was ER+ (7/8), PR+ (7/8), HER2+ (3+). I had neoadjuvant chemo (4 cycles of AC and 4 cycles of taxol, herceptin and perjeta (continuing herceptin right now). Pathology after BMX says repeat biomarkers show ER+, PR- and HER2- for both remaining tumors (the 6 o'clock and 4 o'clock). Has anyone had this happened where the biomarkers changed? I don't know what this means. I'm sure I talked to my MO about it but I can't remember. It would have been soon after surgery.
So the latest is that I have 8 cycles of herceptin left. MO says "there is no data on the prognostic and predictive value of repeat biomarker testing on residual disease" and that we will continue to treat me per original biomarker profile. We are in the process of seeing if my insurance will cover switching from herceptin to Kadcyla (or if I have to figure out how to come up with the money myself.)
Just wanted to talk this through with folks that will understand. If you have any thoughts or feedback for me, let me know. I feel so alone sometimes but really appreciate the valuable information everyone has shared. Thank you!!
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VAN,
I am not understanding your MO's claim. Is he/she stating that a residual tumor's biomarkers have no affect on a patient's prognosis?
This ordeal is emotionally frustrating. I get it. You take Herceptin and Perjeta for a long time - meds that can negatively affect your heart- then u find out that you are HER2 negative. You wonder where is the science in cancer? Was I truly HER2 positive? Or was I on the fence - maybe HER2....but not really? Is that a portion of your thoughts? Because, if so, I get it. I have experienced the run around.
My residual tumor underwent IHC and FISH testing. I was considered equivocal - so I am on round 14 of my 18 H&P infusions. Now... as time has marched on and I have lost some of my chemo fog.... I went hunting for a more reliable HER2 test. The IHC is too subjective. So, I had my pathologist mail a tissue sample of my HER2 positive tumor (negative for estrogen and progesterone) to a facility called “Biosciences" for further analysis. Using the HERMARK assay, Biosciences is able to quantify my HER2 extracellular properties. So........ the HERMARK test states that my residual tumor is HER2 negative. I wanna scream!!! However, I reign in my anger and proactively search for a better doctor and in-person breast cancer support groups.
GIVEITYOURALL
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@giveityourall, thanks for your response. That's completely frustrating to find out you are HER2 negative now (14 of 18 H&P infusions in!) and even more so that YOU had to do the hunting to find that out. I appreciate you talking through my situation. It has given me some things to think about and research some more. Yes, I am concerned about continuing on therapies that may not necessarily be helping since the biomarker change....and of course, the added negative affect on my heart.
ps. I love your handle. I think of you when I'm at the gym or playing tennis, giving it my all.
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Give it your all, no my HER2 status was decided by FISH with my IHC being 2+ so eqivicolso it sounds like Kadcyla is not going to be a home run for me. My FISH score was 4.8. Now I'm wondering why my Onc is sold on Kadcyla
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I am not certain if this can help anyone but in case: look into Proton Radiation therapy. They can be very exact with radiating the tumor and sparing the tissue surrounding it.
I am receiving Proton rads for my regular rads, I am covered for left sided TNBC. At the center where I am being treated, there are mostly people with very tricky tumors. There are also several clinical trials around for it.
Just putting this info out there in case someone can use it!
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Van - I also had a switch in my biomarkers/expression from biopsy to surgery. I was dx with multcentric breast cancer and lymph node involvement. 4 sites were biopsied and identified as triple negative. Did NA therapy ACT and then surgery, low and behold, my nodes and 1 large area of residual disease was dx HER2 +. Everyone was really surprised, and the nodes which showed up as NED pre surgery scan, were dx with extensive disease.
I went for 2nd and 3rd opinions. I had all of my pathology redone from surgery, and MSK suggested I have all of the biopsies retested which I did. Nothing changed. So, I started on the HER2 regimen of HP, since I already had T we added carbo. Essentially everyone said there was no standard of care for my situation, and we needed to try to treat both expressions. They were most worried about HER2, since it hadn't been treated and so we are working on that. I'm now doing radiation, and will likely switch to Kadcyla after rads and hopefully finish up HER2 and then potentially move on to xeloda for the triple negative residual disease.
We tried to figure out what happened, i.e. did the cancer change expression due to resistance, was it there all the time, etc., but in the end I decided it wouldn't change my treatment choices, and thought we were wasting time. My MO (several) were all about changing things up to treat the new expressions.
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Beach5 - thanks for sharing. Makes me feel not so alone. I'm happy to hear you are moving forward and good on you to seek out 2nd and 3rd opinions. Wishing you well.
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